How a woman who couldn’t speak told her story

NORTHAMPTON — Holding a book aloft to show JFK Middle School students a photo of an emaciated teenage girl in diapers on a metal cot, Steven B. Kaplan kept his emotions in check.

“I’ve seen this picture 1,000 times and yet, I’m trying not to cry right now,” said Kaplan, an attorney and the book’s co-author. Students stared at the image in silence.

The location of the photo was not some far-away place, but the former Belchertown State School. The girl, Ruth Sienkiewicz-Mercer of Northampton, grew up to become a disabilities rights activist who helped lead a movement to close the institution. A quadriplegic who could not speak or move, she also published a groundbreaking memoir in 1989, “I Raise My Eyes to Say Yes,” co-authored by Kaplan.

JFK Middle School teacher Julie Spencer-Robinson has used the book for years in her sixth-grade classes.

“It tells the story so well of what it’s like to be trapped in your body,” she said. “It changes the way students look at people with developmental challenges.”

Spencer-Robinson also has a personal connection to the story: Kaplan is her brother-in-law and Sienkiewicz-Mercer visited Spencer-Robinson’s childhood home in Amherst while they were working on the book.

In another connection, Thomas Harte, the grandson of Richard Todd, a longtime magazine and book editor who helped get “I Raise My Eyes” published, is a student in Spencer-Robinson’s sixth-grade reading class this year.

Last week, she invited Todd and Kaplan to JFK to share their recollections about how a woman who could not speak or read a word was able to tell her story to millions.

Seated at the front of the classroom in a setup evoking a TV talk show, Kaplan and Todd answered questions from students about Sienkiewicz-Mercer.

After a fever led her to develop cerebral palsy as an infant, she was placed in the former Belchertown State School at 12, where she spent years confined to a bed and a wheelchair, despite her sharp mind.

Unable to speak, walk or do small tasks such as comb her hair, Sienkiewicz-Mercer endured 16 years of force-feeding and neglect before being released in 1978. She went on to marry another former Belchertown resident, Norman Mercer, and become a spokeswoman and role model for people with disabilities. Sienkiewicz-Mercer died in Northampton in 1998 at age 48.

Kaplan, who now lives in Connecticut, told students he first met Sienkiewicz-Mercer and a small group of other former Belchertown State School residents in 1979 while teaching for a nonprofit education program. Soon afterward, she convinced him to help her with her memoir.

The book’s title, “I Raise My Eyes to Say Yes,” refers to the way Sienkiewicz-Mercer communicated by using the only part of her body she could move, Kaplan said. To complete the book, they spent a decade using “story boards” containing hundreds of words and phrases. Sienkiewicz-Mercer raised her eyes when he hit on the right one, and after much back and forth, he wrote one precious anecdote at a time.

“Guess what? Ruth couldn’t read,” Kaplan said, to gasps of surprise from the students. “She had to memorize all of those words and where they were on the board and then guide me with her eyes.”

“She was so smart,” he added. “Maybe one of the smartest people I ever met.”

“Was is hard to edit her story?” sixth-grader Iliana Rivera-Lovett wanted to know.

“No,” replied Todd, who lives in Ashfield and has edited books by Tracy Kidder, among other authors.

“In a sense this book had been edited all the way along by Ruth,” he said. “She was not shy about saying no to things she didn’t like.”

“How did you feel the first time you met her?” asked student Carlos Rivera.

“I can’t say I was comfortable,” Todd said. “But one thing you would not have missed is that she was a very warm person.”

She was also determined, said Todd, describing how Sienkiewicz-Mercer approached him at a writers workshop and gave him a copy of her memoir to read.

“She had a remarkable will,” he said.

“Do you think Ruth would be happy with how people like her are treated today?” asked sixth-grader Shahzair Tasneem.

“I think she would be very happy with how things have improved,” Kaplan said.

He cited a moment when a girl with disabilities approached Sienkiewicz-Mercer at one of the many book talks she gave after her memoir was published.

“This girl was in public school and had a motorized wheelchair and Ruth was her hero,” Kaplan said. “That was the difference in 30 years time.”

After class, students continued to reflect on those differences.

“I’m glad I haven’t lived at a time when there were those institutions,” said Harte, who was hearing his grandfather’s stories about Sienkiewicz-Mercer for the first time.

“It was incredible how she became the person she was,” said classmate Allison-Kowal Safron of Hadley.

Sixth-grader Evan Renauld of Northampton said the book changed his “outlook” on people with disabilities.

“You can still have a good mind,” he explained. “The lesson is, you shouldn’t judge a book by its cover.”